Cancer Care in the UK – what’s the prognosis?

Cancer is more than just a disease it’s political. Yesterday, when former member of parliament and cabinet minister, Dame Tessa Jowell, herself diagnosed with brain cancer and seriously ill, addressed her peers with a deeply honest and moving account of what it is like standing on the front line fighting for your life, we know it’s beyond crisis. That she feels the necessity to address the issue of cancer care in the UK in 2018, at this stage of her life speaks volumes about the urgency of the critical situation in which we now find ourselves.

Dame Tessa reiterated the alarming statistic that we in the UK, have the worst survival rate for cancer in Western Europe, due in part because diagnosis in cancer is too slow.

I know this to be true from first hand experience – I spoke to 4 GPs in the ten days before I was rushed to A and E in an ambulance. I had had blood tests, and x-rays, couldn’t breathe easily, was struggling with acute swelling and bloating of the abdomen, but the alarming truth of the matter is the system is bursting at the seams. I was literally dying, and almost did, but the urgency of the situation was completely missed. Even now, receiving treatment at a cutting edge NHS cancer centre, urgent scans are taking up to 3 weeks to come back due to the severe shortage of qualified radiographers.

That the NHS is itself struggling to survive escapes no one. I pray that it is not terminal. But I strongly suspect that those who hold influence in these matters lack the will to offer the NHS even palliative care, let alone investment that would be served with a curative intent.

There is inequality across the regions as to what treatments and protocols are available. At my first hospital, local to my area, I was offered only a few rounds of palliative chemotherapy for my advanced stage 4 lung cancer. To clarify, palliative care means end of the line – symptom control, and hopefully some life extension, the doctors don’t have any more options available to them, they are not giving the treatment with an intent to cure, only as a means of aiding “quality of life”. Though surely that is subjective, and not a matter of statistic.

I had to move hospitals and now travel a five hour round trip to meet with my brilliant, supportive NHS oncological team. Who do their utmost to source and offer treatment pathways denied me initially. Believe me, it’s not ideal. But it is how it is. And I am grateful, eternally.

Last week, I was shocked to see on the news that the Churchill Hospital in Oxford, due to acute staff shortages, out of desperation was considering delaying chemotherapy treatment by up to four weeks, and reducing the number of rounds of palliative care offered.

Imagine this, a scenario in which you have been told that you have incurable, advanced stage cancer, and all the fear, worry, stress and anxiety that in itself arouses and add to that, the terrifying possibility of literally and effectively being told to go home and wait to die, because the funding crisis and the resultant staff shortages cannot meet demand.

Is it the cancer equivilent of “Do Not Resussitate”?

That Theresa May can say last week, and I quote,

“It’s a first class National Health Service, that has been identified as the number one health system in the world”

seems delusional, is untruthful and therefore for the millions like myself dependent on it for end of life care, unspeakably offensive.

Tessa Jowell personally, and not doubt professionally and politically understands the challenges of getting the message to land at the feet of the right people, and for them to hear it, and then for them to have the WILL to address it.

She recognises that what cancer patients want and need is ” to know that the best and latest science is being used for them”.

From personal experience, it is profoundly frustrating to know that treatments are available globally from which we may benefit, yet are inaccessible here in the UK due to funding limitations, not just because of a budgeting crisis here but due to the criminally exorbitant cost that pharmaceutical companies demand for their life saving and potentially life lengthening drugs.

She highlights the necessity for collaboration and communication across the global cancer health care community, between service users and doctors alike, that we learn from one another.

Below are the three main points she highlighted in relation to the Eliminate Cancer Initiative which is initially focussing on brain cancer, but I feel is a universal necessity:

Link patients and doctors across the world in a clinical trial network.

Speed up the use of active trials.

Build a global data base to improve research and patient care.

Dame Jowell spoke of giving hope to others in her situation. And, let me tell you, it often seems in short supply, the medical establishment are very wary, unsurprisingly of anything that may be deemed “false” hope. In fact, when you are diagnosed with stage 4 cancer, hope is essentially deleted from your vocabulary. It becomes a dirty word. But like I always say, lucky I have dirty mind!

I hope that Theresa May and Jeremy Hunt really heard what Tessa Jowell had to say, that it isn’t dismissed with a derogatory statement of pacification or a stubborn dismissal of the bleeding obvious, which is that the NHS, is sadly no longer the first class service most of us wish it to be.

I don’t want to see Jeremy Hunt, jacket off, sleeves rolled up a la Cameron in a gesture to us mere mortals that he’s one of us, strolling around wards and hospitals wearing an expression of faux concern. I’d like to see him face to face with people like me living life on the edge of the cliff, staring into the abyss, a service user. People who know what it’s really like. Telling it how it really is.

Because we are not just statistics, to be manipulated, we are not just names called out across the waiting room, we are living breathing feeling human beings, who want to carry on doing just that for a little while longer.

I pray with all my heart that the NHS receives the life saving treatment it needs, so that we, all of us, might receive the life saving treatments that we need.

I give my deepest thanks to Dame Tessa Jowell for speaking as she did on behalf of us all, and I sincerely wish her well. She brought the house of Lords to tears, the headlines say. But it’s not tears we need. It’s action. And I give my deepest thanks too, to those working under such unforgiving and relentless pressure within the NHS to make our lives a little easier.

“Let us live well with cancer . . . not just die of it.” Tessa Jowell January 25th 2018.

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Dedicated staff are tearing their hair out at the delays due to lack of resources, while watching the patients they wish to help suffer, struggle and sometimes die. The ripples spread far waider than just patients and staff, encompassing the extended families and circles of friends of those affected. I hope those with the power to change things for the better drop their political posturing and do something useful. We probably still do have the best healthcare system in the world… for now at least… but the system cannot function without investment in staff, training and research.

Passionately said Leah and I’m with you all the way, changes need to be made asap I understand your frustration there, you are a force of nature never a victim as you showed at your talk last week..you speak more sense than many who run the country.. Om shanti shine on Xxxx

Passionately said Leah and I’m with you all the way, you talk good sense, far better than those running the country, you are a force of nature, certainly not a victim as you showed at your talk last week. I understand your frustration about these matters, the stupid costs of treatments etc etc Something needs to change radically.. Om shanti shine on we need you and love you so much X

Tessa is totally right about the delays in diagnostics. After my initial consultation and scans, I was in no doubt about the fact that I had cancer. However, it took 3 months before treatment began, due to the delays in getting a biopsy result. Three agonising, terrifying months, where my anxiety was ratcheted up, each and every day.

Over a year later, I still don’t know if this delay has affected my prognosis, so the anxiety continues unabated for now.

I’m sure there are many others in a similar, or worse situation, and my sympathies lie with them and their families.

Well said Leah I agree with every word you have said and I feel every word you have said. I had a tumour removed with the top of my left lung in 2009, there was another one in my lower lobe, that was noted, but missed on paperwork, so wasn’t removed till 2016, apparently its only grown a little but time will tell. The NHS need help and they need it now, I speak to people in my situation all over the world and its hard to hear of treatments they receive that we can’t. Something needs to be done. Stay strong lovely lady you are a voice for us all xx

Spoken from the heart and written with clarity,we have just lost a close relative who after having his chemo stopped was phoned by a nurse (not face to face ) and told quite clearly we can’t do anything more you are at end of life !
His treatment from diagnosis to his final days was cruel and at every turn became a re occurring nightmare for him and his family.